A Doctor's Wake-Up Call on "Awareness" Day

I don't know what to add, except to agree with everyone here that your ability to remain witty in your posts here while faced with this incredible amount of crap is amazing, and to empathize in a very very small way, with the part about encounters with doctors who have caused anguish and frustration with their words and general arrogance, ignorance and jerkiness.

Yours is the ultimate Awareness Day story. Sending strong wishes, however not concretely helpful, that things will look up soon.

I sent Dr Donnica an email regarding this situation. I hope she chimes in with some thoughts about what to do.

Hi Dr Donnica--

One of our forum members, who is in a nursing home with CFS, had an absolutely HELLISH experience with a hostile idiot of a doctor yesterday, which ironically was CFS awareness day. I'm sendig you the link to the thread containing his story, so you can read it yourself.

He is in New York. He really needs some help with getting decent medical care. Is there someone that you know that can help him? Please post any ideas or recommendations you may have for him. Thanks, Dreambirdie

Dr. Yes, I am so sorry! Hang in there! In the meantime can you please let this person borrow your computer and direct him to this thread so I can have a word with him? Koans right...things are changing and remember we are here for you.

How you manage to post such witty, humorous, kind-hearted, yet always intelligent and insightful posts, while 'living' in an environment surrounded by such disdain and complete disrespect for humanity is a testament to your fine character, and I for one am humbled and very grateful for all you contributions to these forums.

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These were my thoughts exactly! What a great person you are to keep your dignity in face of this big piece of human crap.

Spindrift, jackie and lost: I'm too ill to travel but my cat promised to lend her tail for a good, homemade cat o' nine tails. I might actually spike it myself with rusty nails or something.

God, this guy is so lucky we are too ill to draw and quarter him on the spot.

Thanks Dreambirdie for sending the e-mail. I've beem lurking on this forum for awhile, but just started posting recently, yet I feel like I know the infamous Dr. Yes. I think he took quite a gut shot yesterday, and am concerned that he has not replied in any manner, let alone with his usual creative wit and humor. Maybe someone that knows him a little better can PM him and get him back on the board. I can't imagine being totally isolated, trapped, while being cared for by these miscreants.:Retro mad:

Wow. That's all she could say: Wow. (paraphrased from one of my favorite children's books). I can only echo everyone else's comments & try to add a focused strategy here. First: Dr. Yes--where in NY are you? My first recommendation is to send your story WITH THE DOCTORS' REAL NAMES FILLED IN to the medical director & president of the nursing home with a comment that you will be sending this letter to the State Medical Examiners Board & whatever board that reviews nursing home accrediation (can someone get him that info for NY?) as well as to the media at large if your treatment is not taken more seriously & the following list of grievances (you will have to come up with them) redressed within 5 business days. Next: send your article to the largest newspaper in your community (if NYC, this is perfect fodder for the Daily News, etc). It is very well written & funny in a sick sort of punch me in the gut kind of way. To pass it onto my media connections, I would need your real name/address/name of nursing home, age & how long you have been there/how long sick with CFS. With your permission, the CFIDS PR people could handle this. This is not, IMHO, a WPI-related issue. We are trying to focus WPI's efforts on research at this point, although I agree that it might be helpful to have you tested for XMRV. I regret that I don't have the resources/time/wherewithal to personally champion individual cases of PWC (other than my son's & my husband's--a full-time job in and of itself!) but I am always happy to help if/where/when/how I can with advice, etc. Please keep us posted & let us know how this eggregious situation is RESOLVED.

Woody...I PM'd him yesterday (many others did as well, I bet), but no reply back (this "event" probably knocked the stuffing out of him - it would have knocked it out of me, for sure!)....maybe he's crashing now.

This isn't the first time he has been "ABUSED" by insensitive docs/staff...just the worst and most blatant type of abuse imo.

We'll all keep trying to let him know we care (he DOES know that) and thanks, db for sending the letter to Dr.Donnica asking for help! (maybe others are writing/contacting too).

Quite a few of us are fantasizing about making a little run on that hell-hole and "educating" them when we spring the dr!:Retro wink:

Glad you're on board and posting! WELCOME! (to the fray!)

(Love the Avatar!...we have a Classic Woody car club where I live...in fact, a show coming up soon, I think! nomads=)

Nina! don't sacrifice your cat! I probably have a spare cat'o'nine tails in my stash of...oh, never mind. Just don't get out those rusty nails yet!

(Oh, now I have ANOTHER mental image!..............

"Spin" hunkered down over the handlebars of the scooter, teetch clenched, jaw resolute!..."Lost" in one side-car, Goggles and mcs mask tightly afixed (probably wielding a battle-axe!) and yodelling a VALKYRIE WAR SONG!... me, in the other side-car - swinging your screaming fuzzed-up cat by her poor rusty-nailed tail!....all of us wearing Blue Riding Leathers, emblazoned with the PHOENIX RISING Logo, barrelling down the freeway at 90 mph, radio blasting "On The Road Again".....towing a U-haul filled with Dr. Yes and all his stuff...with a bound and gagged LUMPKIN of a "doctor?" bouncing along behind!

Now THAT's a thought!.......I'm feeling a little better, thanks.:Retro wink:

Wow. That's all she could say: Wow. (paraphrased from one of my favorite children's books). I can only echo everyone else's comments & try to add a focused strategy here. First: Dr. Yes--where in NY are you? My first recommendation is to send your story WITH THE DOCTORS' REAL NAMES FILLED IN to the medical director & president of the nursing home with a comment that you will be sending this letter to the State Medical Examiners Board & whatever board that reviews nursing home accrediation (can someone get him that info for NY?) as well as to the media at large if your treatment is not taken more seriously & the following list of grievances (you will have to come up with them) redressed within 5 business days. Next: send your article to the largest newspaper in your community (if NYC, this is perfect fodder for the Daily News, etc). It is very well written & funny in a sick sort of punch me in the gut kind of way. To pass it onto my media connections, I would need your real name/address/name of nursing home, age & how long you have been there/how long sick with CFS. With your permission, the CFIDS PR people could handle this. This is not, IMHO, a WPI-related issue. We are trying to focus WPI's efforts on research at this point, although I agree that it might be helpful to have you tested for XMRV. I regret that I don't have the resources/time/wherewithal to personally champion individual cases of PWC (other than my son's & my husband's--a full-time job in and of itself!) but I am always happy to help if/where/when/how I can with advice, etc. Please keep us posted & let us know how this eggregious situation is RESOLVED.

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Thanks Dr Donnica--These are all great suggestions. I hope we can help Dr Yes in whatever way we can to get things moving in the right direction.

Holy crap! This is just awful. I'm so sorry that you had to go through this, Dr Yes - I'm just stunned at how you've been able to turn such a terrible experience into such a powerful piece of writing. You've really got class.

What sort of person thinks it's nicer to have to be in a nursing home than to be living an active life? That doctor must have an absolutely wretched internal life if he envies you that (and it sounds as though he actually does). The sooner he leaves medicine the better for everyone.

I hope Dr Donnica's suggestions are helpful. She sounds like a great ally to have. Meanwhile, all my best wishes from this side of the Atlantic.

OMG...thats all I can say...Im up for donating $ to get the good Dr. tested by WPI..

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That might be a good idea, we could all pitch in. It would be VIPdx where he could gets tested. WPI
tests for research not commercially. If he tested positive for an infectious retrovirus that would probably change the whole game for him. kdp save that test kit so he doesn't have to get on the waiting list.

Right now I am just worried because we have not heard from him. Is anyone able to contact him and let us know how he is
doing?

Jackie, I don't really think my little electric mobility scooter can handel all that and it definitly does not
do 90. :worried: How about we put the scooter in the trunk and just take my car? :victory:

I am in crash, so this will be short. I am typing sideways with head on pillow.

two thoughts:

Is there an attorney in the house? The CDC, AT LEAST, suggests treatments for symptoms and did campaign in Nov. 2007 saying it is separate illness. Although, they didn't go as far as to say it isn't psychological. But this guy's statement that it doesn't exist could possibly be basis for legal claim of malpractice based on CDC public position. Some attorneys take cases on possibility of winning. Remember Philadelphia.

I'm glad you PM'd him, and hopefully he'll be back on soon. I have to laugh at the mental picture of the rescue mission, with Pheonix Rising emboldened above the colors. Don't forget you need to claim the territory, "State of Confusion" and you're are certainly entitled to proudly wear your 1% ers patch on the front of your leathers! On arrival, I could see the guys in the white coats at the rest home and Dr. Yes :victory:

That might be a good idea, we could all pitch in. It would be VIPdx where he could gets tested. WPI
tests for research not commercially. If he tested positive for an infectious retrovirus that would probably change the whole game for him. kdp save that test kit so he doesn't have to get on the waiting list.

Right now I am just worried because we have not heard from him. Is anyone able to contact him and let us know how he is
doing?

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I IM'd briefly with Doc last night but he was IMing someone else at the time. I skyped him a link to this thread a little while ago but he's not online right now.

Wow. That's all she could say: Wow. (paraphrased from one of my favorite children's books). I can only echo everyone else's comments & try to add a focused strategy here. First: Dr. Yes--where in NY are you? My first recommendation is to send your story WITH THE DOCTORS' REAL NAMES FILLED IN to the medical director & president of the nursing home with a comment that you will be sending this letter to the State Medical Examiners Board & whatever board that reviews nursing home accrediation (can someone get him that info for NY?) as well as to the media at large if your treatment is not taken more seriously & the following list of grievances (you will have to come up with them) redressed within 5 business days. Next: send your article to the largest newspaper in your community (if NYC, this is perfect fodder for the Daily News, etc). It is very well written & funny in a sick sort of punch me in the gut kind of way. To pass it onto my media connections, I would need your real name/address/name of nursing home, age & how long you have been there/how long sick with CFS. With your permission, the CFIDS PR people could handle this. This is not, IMHO, a WPI-related issue. We are trying to focus WPI's efforts on research at this point, although I agree that it might be helpful to have you tested for XMRV. I regret that I don't have the resources/time/wherewithal to personally champion individual cases of PWC (other than my son's & my husband's--a full-time job in and of itself!) but I am always happy to help if/where/when/how I can with advice, etc. Please keep us posted & let us know how this eggregious situation is RESOLVED.

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Thanks Dr. Donnica for your advice. The problem is that Dr. Yes needs an advocate. Getting his story out to the media at this point has a HUGE potential of backfiring and making his living conditions and treatment by doctors exponentially worse. Sure the Daily News might run something like this, but aside from consciousness raising, how is this going to help him immediately and directly?

What he needs is someone who can navigate the NY system and help him find alternative housing (a better nursing home?). Aside from the mistreatment by his doctors, his severe allergies are aggravated at this location in Long Island. Additionally, the food is of poor quality and of insufficient quantity. He has lost substantial weight since he has lived here and is continuing to lose more weight.

Though he can currently walk a few steps, he would not be capable of independant living without ample home health care. Whatever number of home care hours insurance would cover would not be enough to help him with ADLs. Although independant living sounds like an appealing solution, the likelihood is that home health aides won't always show up when they are supposed to and Dr. Yes will be left alone, hungry, and without any help at all.

What is the best nursing home in the New York City area? How should we define "best?" What criteria would we use? Does it matter whether it's garden style or a high rise? Close to the urban area or farther out? I know there are government ratings for nursing homes, but I don't know if they are helpful.

In general, what personal experiences have people had with nursing homes--especially in the New York City area?